Blogging About Illness Update: Why we do it, and what's new about it

"For the chronically ill, blogging is a powerful thing. We often feel isolated and invisible, but when we put ourselves out there in a blog, we suddenly have a voice, and we start to build a community. It does take a lot of energy, specially when you explore topics that are emotionally taxing, but the end result is worth it. I know I’m never alone in this, and I can help other people see that they’re not alone, either."
Adrienne Dwello of the FM and CFS Blog on about.com, from "My Fibro Story" on the National Fibromyalgia Association's Fibro Blog

In 2007 when I wrote about blogging about illness, my research was predominantly on writing about illness because I just couldn't find much information on blogging about it.  In the paragraph above, Adreinne has wonderfully summed up how blogging about illness is different from writing about it.  She's really good at that, summing things up.  Blogging about illness is all about community and the feeling that we're helping others.

Blogging about illness has really come a long way in three years.

For one thing, blogs are now being turned into books.  Some call them "blooks."  Example:  Know Your Numbers, Outlive Your Diabetes by Amy Tendrich of Diabetes Mine.  Or sometimes blogs are created to go along with a book release.  I can't find an illness example where this has happened, so I'll use The Happiness Project because I think it's such a great and generous blog/website.  Gretchen Rubin wrote the book and has a blog about it too. 

Another new development is that there are "Blog Carnivals" for  different topics.  There are several blog carnivals on chronic illness/pain topics.  Entering a post in a blog carnival is a good way to get exposure for your blog, and a way to kind of force yourself to write on a schedule.  In the interest of full disclosure, I have never entered a blog carnival.  I hope that one day I will do that... I think I've been writing long enough now that I'm about ready to try writing on a short time deadline like the ones that are usually involved in blog carnivals (to me, two weeks is a short deadline).  Some examples of blog carnivals:  The How to Cope With Pain Pain Blog Carnival; Patients for a Moment Patient Centered Blog Carnival; and Chronic Babe.com's Blog Carnivals.

Speaking of ChronicBabe, did you know that Jenni Prokopy started that whole website as a little ol' blog?  It's true:

I started ChronicBabe.com as a blog, a hobby – a way to share my experiences with other young women. When I was diagnosed, I felt alone and confused, and the online resources I found sucked, frankly, so my goal was to share my perspective with others like me so they wouldn’t feel as alone as I did. This came about after years of working with multiple doctors, and coming to a place of acceptance regarding my illness.

Interview with Loolwa Khazzoom of Dancing With Pain

Another change that's been happening with blogs is expressed very well by Susannah Fox of the e-patients.net blog in E-patients, Cyberchondriacs, and Why We Should stop Calling Names:

"The phenomenon of using the internet to gather and share health information is now mainstream."

Our illness blogs are part of this phenomenon.

You might be asking yourself 'What exactly is an e-patient?' Cyberchondriac is pretty self explanatory (cyber + hypochondriac).

In 1999, Tom Ferguson, MD, came up with the term “e-patient” to describe individuals who are equipped, enabled, empowered and engaged in their health and health care decisions.  The internet is a force that has allowed us access to much more information to help us with the four E's.

I think that people who blog about their illness are usually at some stage in the journey toward becoming an e-patient.  They are moving toward "using every aspect of empowerment, technology, and participatory medicine to beat the odds" of chronic illness, just like e-patient Dave did.  They are also providing a lot of the content on their blogs that is being used to help others on their own journey toward becoming an e-patient.

E-patient Dave de Bronart's blog is the epitome of "e-patient-ness;" he beat advanced kidney cancer and has a new career helping to transforming health care by using some incredible and so far horribly underutilized resources: the patient and communication!  Check him out when you have time.

Three years ago when I wrote about blogging about illness, I quoted Arthur W. Frank in Part 2: Why Do People Write About Their Illness, and in Part 3: The Benefits of Blogging About Your Illness.  (Note: In 2007 I wrote strictly about people who were writing/blogging about their own illnesses.  Another change in landscape of blogging about illness is that more people who are not the actual patient are doing it; an excellent example is Fibro World written by the mother/daughter, caregiver/patient team of Fibro Mom and Fibro Dot.)

Back to Arthur W. Frank.  For some reason I imagined him to be a wizened old man, I guess because such wisdom emanates from his work.  But he doesn't actually look that old. Or wizened!

In 2007 I wrote:

It has been said that from the era of the Internet a "new patient" would emerge, one who researched his or her ailments in the comfort of home, then challenged a doctor with the newly acquired knowledge.  (From 'Sick blogs' help afflicted share news, seek comfort.)  Dr. Frank and  says that sick blogs and patient pages are evidence that that moment has arrived, a sign that the new patient has gained an unprecedented sense of empowerment from her online community. Empowerment is definitely a benefit.

Frank's book “The Wounded Storyteller” also identifies the voice we all need to access in the battle with life-threatening or life-altering illness. When we recognize this struggle as an opportunity for journey, we can also recognize the call to help others currently in the "trenches" of illness, to bring about their healing. I definitely feel called to write and those are two of the reasons why: it helps me to access “the voice” I need to battle illness; and for me the writing itself has turned out to be an opportunity to help others with invisible illness which has led to other opportunities to help that don’t involve writing, such as facilitating support groups.

As Arthur Frank wrote, quest narratives are about finding the insight that comes as illness is transformed into a means for the ill person to become someone new. I think the big picture of what's happening to me, and what I'm chronicling in my blog is somewhat of a quest narrative. I'm in the process of figuring out what my life is going to be since it can't be what I originally intended, due to the monkey wrench of chronic illness which life has thrown me. There's a metamorphosis happening here and I am only able to see it because my writing in my blog, and in my local FM support group newsletter before that, has helped me reflect on it and recognize it.

My blog has come a long way in three years.  In 2010 I can add that my quest narrative, this blog The ICI Experience, has led me to a workable theory of the answer to the question 'Why me?' that most of us with illness ask ourselves.  It's a big theory and it's leading me on to another journey.  I've been pondering how to begin to tackle describing it on The ICIE.  It's going to have to be another blog post or series, and technically it's going to be a whole different blog, but I think the concept of living downstream will serve as a good closing to this series and to the beginning of a new one. 

Living downstream is a phrase used by environmentalists to make us aware of the impact our actions today have on our lives tomorrow.

This is The Parable of Living Downstream:

There was once a village overlooking a river.
The people who lived there were very kind.
These residents, according to parable, began noticing increasing numbers of drowning people caught in the river’s swift current. And so they went to work devising ever more elaborate technologies to resuscitate them.

So preoccupied were these heroic villagers with rescue and treatment that they never thought to look upstream to see who was pushing the victims in.

This film is a walk up that river. The river of human cancer.

~Sandra Steingraber

My theory is that that river holds a lot more illnesses than cancer.  My new journey (and blog) will be walking up that river with Sandra Steingraber, and many others.

Quest narratives in fairy tales end with the hero finding what they're looking for or achieving their goal.  Hey, it could happen!

 The Flint River in Albany, GA by Steve Robinson